A Concept for Giving Back to Caregivers

There have been times around the holiday season of giving when I have thought, “I give to others every day.  Will anyone give to me?  If they do, what do I need or want?”  I wasn’t thinking of a sweater or a new pair or socks – I was thinking of care.  I was daydreaming about someone caring for me, the caregiver. 

Eva Feder Kittay is a philosopher and mother of an adult daughter, Sesha, who has severe cognitive disabilities.  Eva also cared for her ailing and elderly mother until last year. 

Eva coined the word doulia to describe a new paradigm for reciprocity for caregivers in the community. She describes doulia as an ethical principle that recognizes giving care as an important contribution to the overall good of society. “We can ask whether parents or kin who assume the role of caregiver should have claims on the larger society to support them in their efforts to provide care. If, for all the effort and care in raising a child with disabilities into adulthood, there is no payback (conventionally understood) to the society at large, can we still insist that there be a state interest in helping families with the additional burdens of caring for a developmentally disabled child? Is there a state interest in assuring families that their vulnerable child will be well cared for when the family is no longer able or willing to do so?”[i] Kittay answers her own question with a resounding yes and that response is rooted firmly in her own mothering experience. She describes a concept of interdependency or “nested dependencies” that recognizes the inevitability of dependency as a fact of being human. It is via the idea of doulia that reciprocity can be realized through policy because the driving force is an equality that “our full functioning presumes our need for and ability to participate in relationships of dependency without sacrificing the needs of dependents or dependency workers.”[ii]

Here Kittay is advocating an ethical framework and moral obligation for society to look after caregivers so that caregivers can carry out that care without sacrificing their own wellbeing. She is talking about ‘payback’ for the caregiver. 

We know doulia as friends and family members who help a new mother by watching the older children and performing household chores so that the mother can give total care to her newborn. Implicit in this natural family tradition is the understanding that the mother is “owed” care because she is giving care to a much loved, highly vulnerable newborn. Her first priority is to give the best care possible to her beloved charge.

Over the past few years, I have been thinking about how to ignite a wholesale shift in thinking about care across society.  Kittay’s ideas about doulia and inevitable, nested dependencies provide a great jumping off point for a new conception of care for the caregiver. 

But where do these ideas lead, practically speaking?  Well, I believe that employers should have a two-pronged corporate social responsibility program – family care and community care.  Assuming that some employees have caregiving responsibilities that are sometimes onerous, causing them to claim sick days or leave to look after a critically ill spouse, elderly parent or child with a disability, the company could and should support its own.  The second prong of the corporate social responsibility strategy would be a focus on the needs of the greater community.  Another idea would be to have local volunteer bureaus match families with volunteers.  My local volunteer bureau matches only willing helpers with agencies, never with needy private citizens. 

Kittay is right.  We don’t blink an eye when people rush to help with household chores of the new mother.  We instinctively know that she needs to have her full attention on caregiving and the duty of others is support that role.  So why are older caregivers any different?  They aren’t.  And if long-term caregivers don’t receive long-term support, they and their charges will suffer.  Doulia is a concept worth thinking about and acting upon this giving season and all year round.

---

[i] Eva Feder Kittay, “When Caring Is Just and Justice Is Caring: Justice and Mental Retardation,” Public Culture, 13.3 (2001): 565.

[ii] Kittay, Love’s Labor, p. 132.